04 October 2013

51.07% Mom

Considering I've been married for over 7 years now and began dating my husband a few years before that, I haven't had to experience a break up in a long time... it's a good thing too because, yuck, they are no fun. I did have a break up of sorts today however... with Luke's Genetic Counselor. This "break up" has had me reflecting on the relationship we've had with Medical Genetics in general and I have some thoughts...

While I didn't get the cliche line "it's not you, it's me", I did get "I don't think I want to see you again", which taken in a different context could have been pretty dang painful... this time though, it was rather exciting! When we had our first consult with medical genetics, I was still pregnant with Luke. We gave our genetic counselor (the assistant to our geneticist) the information about our family tree (it seemed like they wanted to go back about umpteen generations and were interested in every minor thing about every individual) and we also talked about how people get Down Syndrome. The visit was an especially upsetting one for me because I learned that in many instances [most actually], the mother contributes the extra genetic material in the form of a 21st chromosome that causes the baby to have Down syndrome (at least in regards to the Nondisjunction form of DS that Luke has). I've always kind of been a perfectionist... sometimes obsessively... I get annoyed if every strand of hair isn't perfectly straight after I've flat ironed it. My formatting has to be just so when I'm completing computer work. I like to be prepared before attending a meeting. My bed needs to be made if I'm having company, even when there is no chance they will be entering my bedroom. I feel the urge to have seasonally approriate candles. Sometimes I go overboard. I always have more than enough food when we have company. I find myself buying new clothes for special events. I have to vacuum before we have a therapy session for Luke (seriously, who wants to sit on gross carpet?). And although it irritates Dustin a little, I LOVE it when my boys match!! I don't always meet all of my own expections (and I've found that it happens less than ever now that I have two small kids), but I work pretty hard at doing things in a way that "feels right" to me.

The idea that I might have been the contributing factor to creating a "differently abled" baby was really tough to take. When the genetic counselor got to that point in our conversation, I lost it. I kept thinking, "What if Dustin blames me?, What if he stops loving me?" Deep down I even thought, "What if he leaves me?" In reality none of things ever happened and honestly, I'd be surprised if he ever even thought any of them. I know that Dustin loves all three of us and I there is no question in my mind how he feels about baby Luke, especially as I observe him almost running to him (and Matthew too) with hugs and kisses after a day at work.

So to get back to my conversation with our Geneticist, he told me "You are well adjusted in this role as a mom to a child with special needs, I'm really proud with how great you're doing. Don't sell yourself short. You are doing all the right stuff; you've sought out a great support system (the other moms in the Special Loves Network and a Facebook group that I'm in have been invaluable), you're participating in Early Intervention and have also engaged in private therapies, you're seeing the right specialists and have a great pediatrician. Ms. Taylor, unless you feel like you have unmet needs, I don't think I want to see you again". And just like that... he broke up with me! Adios, amigos! We were released from Hematology last month and now Genetics this month! I feel like with the exception of Cardiology and Developmental Pediatrics, we're probably getting close to splitting ways with some others too! I'd heard that the first year can be brutal as far as appointments are concerned and as we are getting closer to the one year mark, it feels good for them to be tapering off!

As far as that whole idea of me likely being the contributing factor to Luke having Down syndrome... the other side is that the next time he does something really awesome, I can brag to everyone that it's because he's 51.07% mom!

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